Read the Conversation
Meeting highlights:
- Priorities for 2025: Become the preferred rare diseases partner in DACH, strengthening our portfolio of orphan drugs with the latest acquisition in Hematology
- Recordati Rare Diseases’ DACH Focus Pillars: Patient detection, patient activation, and patient adherence => Build a tailored Rare Disease model to become the preferred RD partner
- Recordati Rare Diseases’ DACH Holistic & Value-based Approach: Leveraging technology for early patient detection, raise awareness and guide policymakers and scientific societies in the advancement of rare diseases models, partnering with Health Tech companies to offer patient support
- The Importance of the German Market: Recordati Rare Diseases’ second most important region in terms of revenue after the US, the need to address Germany’s decentralized system to improve patient detection & treatment
- Recordati Rare Diseases DACH Attracting Talent: Shared mission to positively impact patients’ lives, “We understand the need, we work together, we fight for every patient.”
EF: What are the current priorities on your agenda, and what can we expect in 2025?
MK: About three years ago, we set our agenda, which we call the "Plan on a Page." It outlines our long-term vision for where we want to go, specifically through 2026, which is now fast approaching. Our goal was clear: to become the preferred rare disease partner in Germany.
To achieve this, we have leveraged significant strengths, starting with the breadth of our portfolio. We have one of the broadest portfolios of Orphan drugs in the industry. Our portfolio spans rare diseases, Hematology/Oncology, endocrinology, and metabolism. This also includes multiple pediatric indications, which is crucial, as many rare diseases first present symptoms during childhood. With this strong foundation, we have built a solid base from which to work.
There are key areas we need to enhance further. The first is what we call "patient detection," ensuring early and accurate diagnosis, which is especially critical in Germagny’s decentralized healthcare system. The second is "patient activation," enabling swift action once a diagnosis is made. The rare disease space is indeed becoming increasingly competitive. While successful selling remains a key element, patient activation goes beyond that. It involves encouraging patients to actively seek treatment. One of our biggest challenges is often the "watch-and-wait" approach, which is common in many of the disease areas we focus on. Addressing this mindset is a critical aspect of patient activation.
The third key capability we emphasize is patient adherence. Once a patient begins therapy, a significant effort has already been made to secure the correct diagnosis and initiate treatment. It is vital to ensure these patients continue their treatment to maximize its benefits and prevent drop-offs.
To strengthen these three capability areas—patient detection, activation, and adherence—we have implemented a range of initiatives. Over the past few years, we’ve made remarkable progress, driving forward innovative projects that are helping us reach the next level.
On a broader note, Germany's decentralized healthcare environment poses unique challenges. It is somewhat similar to the U.S., with its distinct office-based and hospital-based care segments. Diagnosing many rare diseases requires a multidisciplinary approach, but when specialists work in separate settings, collaboration can be difficult.
A recent paper we published highlights the impact of this. For example, in Cushing’s disease, the time from symptom onset to diagnosis in Germany is twice as long as in other parts of Europe or the U.S. While Germany’s healthcare system is robust overall, these gaps in rare disease diagnosis and management are areas we must address to improve outcomes.
EF: Regarding the topic of diagnosis delays compared to other more developed markets, how actively are you involved in shaping this conversation? How do we bridge the gap from where we are now to where we need to be, and what steps can we take to align stakeholders and drive progress forward?
MK: I think this is one of the toughest challenges to address. Firstly, there is a need for a baseline level of disease awareness. While we cannot expect every GP to know about all rare diseases, we should aim to help patients navigate the system more efficiently once certain symptoms emerge. Faster referrals to specialists are a crucial part of this process.
To tackle this, we are adopting a few key approaches. For one, we are working on the policy front, collaborating with policymakers and major medical societies. Together, we are publishing papers that highlight gaps in healthcare delivery specific to rare diseases in Germany. This helps initiate conversations with policymakers. However, we often find that while Germany does have a rare disease agenda, it has not seen as much implementation in recent years compared to countries like France. Our goal is to reinforce these efforts and be part of the solution.
Additionally, we are leveraging technology. For instance, we are integrating our efforts into patient record systems in Germany. This involves embedding algorithms into the software that flags potential rare disease cases, such as alerting physicians when a patient’s symptoms might indicate Cushing’s disease. These partnerships and tools aim to enable earlier diagnoses and better outcomes for patients.
EF: How would you characterize the strategic importance of the German market to Recordati? What strategies do you use to attract resources to support the German market?
MK: Unlocking the full potential of a highly decentralized market like DACH requires a tailored approach and appropriate investment levels to ensure patients across the region are properly diagnosed and treated. We strive to find this “right balance” and build a tailored business model for Rare Diseases here at RRD DACH.
EF: Could you elaborate on the strategies of patient detection, activation, and adherence and how you are implementing them in Germany?
MK: Let me start with patient detection. We are taking a few approaches here. One involves working on a software solution for physicians in partnership with an external company. The idea is that when certain symptoms appear, the physician is alerted, making them more aware of potential rare diseases. We are collaborating closely with them to develop the right algorithms for early detection.
Another approach is through publishing studies, like the one on Cushing's disease, where we have identified specific gaps in healthcare delivery in Germany—highlighting cases of underserved patients. We bring these findings to the attention of policymakers and scientific societies, raising awareness of the issues at hand. By doing this, we raise awareness, which is the second part of our approach.
These are just a few ways we are improving patient detection. There is no one-size-fits-all solution, though. The real challenge is bringing all these elements together to create a cohesive rare disease model. The key is synchronization—getting all the pieces to work in harmony.
One thing that sets Recordati apart in the rare disease space is our ability to unlock value both for patients and for the company. On the patient side, it is about ensuring that the therapy finally reaches the people who need it.
I do not think it is just about capabilities. It is also about commitment. What truly sets us apart is that we leave no stone unturned.
This level of thoroughness, of “turning every stone,” is essential in the rare disease space. It is a key factor in our success. Another point I want to emphasize is that being a smaller company in the rare disease sector is not a disadvantage. Being small and highly integrated is an advantage. Look at the companies that have been successful in rare diseases over the past 20 years. There are several examples of smaller companies that grew and succeeded because they were fully focused on patients, tirelessly working to bring their therapies to those in need.
EF: How does Recordati Rare Diseases ensure that it attracts and retains top talent, and what are the key skill sets you prioritize in the rare disease sector?
MK: At Recordati, attracting and retaining top talent is a key part of our "plan on a page." To be successful, we need to be an attractive option. When I talk with applicants, I am often impressed by the breadth of experience they bring. Eventually, when we talk about their experience, what strikes me is that they sometimes have limited ability to make a significant impact on patients.
At Recordati, it is different. When I tell people how quickly we make decisions, how fast they can see the initiatives they start come to life, and the impact they have on patients, it resonates. They realize they can actually make a difference in months.
Additionally, while other companies talk about agility and transformation, having been in that space, I can tell you that at Recordati, we are able to genuinely execute those principles. We do not just talk about them; we live them. Our teams are very close to the customers, highly integrated, and empowered to make decisions from the customer’s perspective.
There are very few decisions that we escalate to the portfolio level. We are very clear on what requires a portfolio decision and what can be handled at the team level. When it is about a specific customer group, the decision sits with the team, not at a higher level.
This level of agility and empowerment is what makes us such a great employer. I am not just saying that. If you ask my team, there is so much excitement and engagement. It is really rewarding to be part of a small but influential team that is truly making an impact on patients.
EF: If you were speaking as an advocate for rare diseases at a global event like the World Health Summit, what would your message be for advancing the rare disease sector? What key steps do we need to take to move the field forward?
MK: The approach to addressing rare diseases really depends on the market environment. For Germany, specifically, some challenges differ from other markets, such as in more centralized or developing countries.
One key question is how to bring rare diseases to the forefront and raise awareness efficiently among physicians. With over 7,000 rare diseases and therapeutic solutions available for only a small percentage, it is not realistic to educate on every disease. Instead, we should focus on educating physicians about the rare diseases where therapeutic solutions exist and find an effective way to shape their thinking around those conditions.
The second challenge is creating an environment where rare diseases are diagnosed through a multidisciplinary approach. We need to ensure that professionals like pathologists, hematologists, radiologists, and others are incentivized to collaborate in diagnosing patients correctly. This requires changes to incentive systems and training clinicians to adopt the right mindset. These two aspects drive progress in rare disease diagnosis and treatment.
EF: What are your most proud accomplishments, and do you have a final message for our readers?
MK: Creating a passionate, unified, and engaged team has been our greatest accomplishment because, ultimately, it benefits the patient. A motivated team drives the process of correctly diagnosing and treating patients. When we reflected on our plan a couple of years ago, I asked the team to describe the core DNA of Recordati Rare Disease in Germany in one sentence. They responded, "We understand the need, work together, and fight for every patient." While it might sound a bit dramatic, it is a very fitting description.
I believe that by combining these factors, understanding, collaboration, and resilience — we are creating a highly passionate team. It is incredibly rewarding to lead and serve this team here in DACH!
